July charity news – Joss Searchlight

“We’re there for families during their darkest days”

Dianne Parkes, 51, from Oxfordshire, explains how Joss Searchlight makes a difference to families of children with cancer

Sometimes the smallest things can make the biggest difference, which is something I have learnt from the many families of children with cancer we support at the charity I founded, Joss Searchlight.

It’s so humbling to see their gratitude when we remember their child’s birthday with a gift or arrange a trip for the family. It gives them a lot of comfort and a reminder that they are not alone, which is absolutely vital.

My own family’s experience of childhood cancer began in 2005, when my son Joss, then four, started dragging his leg and falling over for no apparent reason. I took him to the GP who said it was probably hip problems, but my instincts told me something wasn’t right.

I noticed Joss had developed a squint in his eye, so I scanned through a medical book until I found an illness that matched his symptoms – a brain tumour. Terrified, I went straight back to the doctor’s office with my concerns, and we were immediately referred to our local hospital for an MRI scan, which showed a brain tumour.

We were referred on to the John Radcliffe Hospital, where it was confirmed that Joss
had a brainstem glioma – which is a cancerous tumour in the brain stem. We were then told it couldn’t be operated on and Joss had a zero per cent chance of survival. He was given two weeks to live – our world just fell apart.

After speaking to the consultant, we left the hospital with Joss and were suddenly on
our own with no idea of where to turn for help and support. It was impossible to accept the fact there was no hope at all for our son, especially as we still had what appeared to be a very healthy, very happy little boy.

Following his diagnosis, we threw ourselves into doing everything we could do for Joss, which included trying every complementary therapy we could. It empowered us as parents in knowing we were doing the very best for our boy and were leaving no stone unturned. It was something to give us a little bit of hope.

We also made sure the time he had left – which ended up being six years – was incredibly special. We took him on a trip to Disney World, Florida, and he also spent time on The X Factor set with Simon Cowell.

Although Joss was in a wheelchair for a few months following his diagnosis, one day, when he was five years old, he stood up and walked up a whole flight of stairs. From then on he stayed out of a wheelchair and remained healthy until he was ten, by which time the tumour had grown so big that his health started to decline.

It was a very cruel cancer, which robbed Joss of his eyesight, mobility and his voice during the last few months of his life. Then, in January 2011, Joss went for what should have been a simple operation, to have a shunt inserted to drain the water from his brain. However, after coming around from the operation, Joss went into respiratory arrest and
never recovered. We had to make the heartbreaking decision to switch off his life-support machine and say goodbye.

After Joss passed away I threw myself into work to cope with my grief, and I also began setting up the charity Joss Searchlight, which was launched in May 2011. My husband always describes having a child with cancer as like being down a deep, dark hole with no light at the end, and we aim to be that ‘searchlight’ for people. We want to be there to help families through this extremely difficult time in any way we can, whether that’s through advice, counselling or just pointing them in the right direction for the help they are looking for.

The one thing I wanted to find when Joss was unwell was another mum or dad going through something similar who I could talk to – someone who understood how life changing and exhausting the journey could be.

Sadly I was unable to find someone to speak to myself, so that was a main motivation for setting up the charity. We offer a telephone helpline, home visits and social events to bring families together and get them talking. I think the best way to cope in these situations is to have a friend who really understands, and that’s what we hope to provide with Joss Searchlight.

Joss Searchlight – THE FACTS

Approximately 1,285 children will be diagnosed with cancer every year in the UK. Thankfully most of these children will be able to go on to lead normal, healthy lives after treatment.

Joss Searchlight was established in 2011 to support the families of children suffering from cancer.

The charity aims to be a central point for family cancer support, information and guidance.

It offers a telephone helpline, home visits, creative therapy for children and siblings, psychotherapy and also arranges holidays, short breaks and celebrity meet-and-greets.

The charity has produced a range of information and support films, which are all checked by health professionals, to help families cope.

The It’s Good to Talk programme provides a network for families who understand each other’s pain.

BIG GIVE UPDATE

The £11,130 raised will help to reduce the isolation of families affected by childhood cancer and get them connected through the ‘It’s Good to Talk’ programme. It will produce support films for families; employ professionals to support the project, and arrange social events to bring families together.